Freedom of Expression, Misinformation, and Anti-Vaxxers: The Right Thing to Do Is Not Obvious

Posted March 25, 2020
By Dax D’Orazio

As a parent of a small child, I’ve been to immunization clinics quite a bit over the past two years. During every visit, I’m curious to ask the public health nurses about the giant elephant in the room, at least as someone who researches freedom of expression issues: How do you satisfy your public health mandate at a time when vaccine skepticism or hesitancy seems to be on the rise? 

Of course, it’s easy to portray those who are skeptical or hesitant in an unsavoury light, but we would do well to understand that many people have concerns about vaccines that are not in any way associated with the fringes of public discourse. As a nurse recently told me, they typically don’t see parents who are consumed by conspiratorial thinking. Instead, the parents they see are a mixture of well meaning, curious, and not particularly exposed to the most up to date scientific research on the topic. In this context, the best public health strategy is exposing these parents to the most rigorous and publicly accessible research on the topic. But many people are not receiving their information about vaccination from accredited public health professionals. To complicate matters, misinformation of this variety might have consequences well in excess of any single parent’s decision to not vaccinate their children. This raises some compelling questions about freedom of expression and the potentially dangerous consequences of anti-vaccine activism. If vaccination is a public good (as I firmly believe), how should we respond to activism that actively seeks to undermine this good?

In 2016, a controversial anti-vaccine documentary film, Vaxxed: From Cover-Up to Catastrophe (2016), was abruptly pulled from the Tribeca Film Festival lineup. Robert De Niro (one of the festival’s founders) later informed the public that  “after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community,” a decision was made to not show the film. Following the cancellation, the film found its way to theatres across the Unites States, most notably at the Angelika Film Center in Manhattan, gaining momentum with additional media coverage, fundraising, and touring. A few months later, the Princess Theatre in Edmonton, Alberta, screened the film and attracted criticism for granting a platform for inaccurate and harmful views. Although the theatre admitted in a statement that the potential harm of the film complicated their decision-making process, it said the response from critics ought to be “voting with their money.” Interestingly, the Princess Theatre recently screened the Vaxxed sequel, Vaxxed II: The People’s Truth (2019), and again attracted criticism

Of course, a theatre is a private enterprise and free to screen any controversial films that do not violate Canadian law, provided they are willing to weather a storm of negative publicity. But how does a film that casts doubt on one of the greatest medical advances in our history even muster enough interest to be commercially viable? Does the public exhibition of these documentaries warrant public concern and potentially a more robust response to counter their message? If we assume that the harm associated with anti-vaccine activism is significant, would it naturally follow that it should be denied a platform? Curious to answer these questions, I recently set out on an investigative journey in Edmonton. 

On February 1st of this year, the Capitol Theatre at Fort Edmonton Park hosted a secretive screening ofVaxxed II.  In order to attend the screening, organized by Canadians for Vaccine Choice (CFVC), one needed to purchase tickets in advance and wait until the night before the screening for the venue to be announced. To my surprise, I was asked to present my ticket for inspection by security before reaching the theatre parking lot. The current president of Vaccine Choice Canada (VCC), Ted Kuntz, explained that these precautions are taken in order to minimize the “disincentives” that venues face when they encounter criticism and opposition in the community. The latter include increased fees for security and liability insurance, in addition to the potential for last minute cancellations. The crowd at the theatre that afternoon was what you might expect on your average weekend matinee: roughly 100 people who represent the broad diversity of the Edmonton community. One difference was particularly jarring for me though: the presence of a handful of small children and babies—potentially unvaccinated ones. 

The film itself tells the story of the fallout associated with its prequel in 2016, with a particular focus on the Tribeca controversy and subsequent tour of filmmakers and associated activists. From the outset, it’s clear that this is a story about battling the mainstream. As they travel across the United States promoting the film, they gradually collect the testimonies of (mostly) parents who provide speculative correlations between their children’s vaccinations and a variety of injuries and afflictions (ranging from allergic reactions to autism spectrum disorder and acute physical disabilities). Over time, they collect thousands of messages of support and inspiration written directly on the outside of their recently acquired tour bus. The personal stories are difficult to witness because they are the worst nightmare of any parent. The pain of the families is real, the distress palpable. The problem, however, is that the correlations posited by these parents (and the filmmakers and activists filming them) contain scant scientific evidence linking vaccines and the various ailments that afflict their children. The links are speculative at best and the film makes little attempt to entertain alternative hypotheses, including contrary medical research. 

Divisional Director for Pediatric Infectious Diseases at the University of Alberta, Joan Robinson, says that serious adverse reactions to vaccines are “amazingly, amazingly rare” and typically manifest themselves immediately as anaphylaxis after administration (hence why best practice is to wait around 15 minutes following inoculation). There is always a chance that a child may have an immunodeficiency that poses some risk for live vaccines and some parents have obviously attempted to link a number of different subsequent harms to vaccination, “but often there's no proof that the vaccine actually caused the harm.” Even Kuntz is honest about the speculative nature of these links, although he argues that this is a necessity due to the alleged lack of scientific study regarding risks: “The only vehicle that we have left is parents telling their stories because the medical industry is not interested in hearing about this.”

A charitable interpretation is that suffering and grieving families who are anti-vaccination are simply looking for something or someone to blame, and likewise want to prevent similar tragedies. Most would prefer to think that if they were themselves subjected to similar tragic circumstances, they would not be consumed by conspiratorial thinking. However, if there is one thing that characterizes our contemporary moment, it is surely an innate distrust of elite opinion, and nobody can confidently say that they would be immune (no pun intended) to conspiratorial thinking in that situation. Likewise, the anti-vaccination movement has brokered these heartbreaking stories to maximize the potency of their misinformation, rather than getting lost in the details of medical science. 

Stephen Kent is a Professor in the Sociology Department at the University of Alberta and has spent an entire career studying new religious movements and cults. He highlights the gradual process by which an individual becomes impervious to conflicting information, a process that might start with some modest anecdotal experience: “It winds up connecting to a whole series of other alternative beliefs, and they reinforce one another. It’s the reinforcement that is so crucial for people staying in a cognitive bubble.” Another problem with the current marketplace of ideas (among many, one should add) is not that there is one truth that is strictly enforced, but that there is so much information that distinguishing between fact and fiction requires more time and energy than most are willing (or able) to invest. According to Vice Dean and Professor in the Faculty of Law at the University of Alberta, Eric Adams, “vaccination fits pretty comfortably into a world in which it would seem facts are tested on a daily basis and there’s no judge to say what’s right or wrong. It’s the court of public opinion.” Similarly, Kent situates anti-vaccine activism in a larger “network of alternative anti-authority, anti-science, marginal political belief systems.” As a recent CBC Marketplace episode explains, the decision-making process of parents skeptical or hesitant about vaccination is likely affected by a series of cognitive biases that are strategically exploited by anti-vaccination activists in their very carefully crafted messaging. These include the creation of emotional connections in response to compelling individual stories of victimhood, the predilection for inaction in a context of difficult decision-making, and the suspension of rational impulses (including statistical probabilities of risk) when gripped by fear. 

Unsurprisingly, activists have deliberately framed their movement as an assertion of individual rights. In these documentaries and elsewhere, they are keen to portray themselves not as outright opponents of vaccination, but as advocates for ‘medical freedom,’ ‘medical choice,’ ‘informed consent,’ and ‘bodily sovereignty.’ Kuntz considers it dishonest to label the movement as ‘anti-vaccination’ since most parents in the movement have actually had their kids vaccinated. The one thing that binds them, according to him, is that the parents of vaccinated children who have subsequently suffered injuries link them to vaccination. Vaxxed II, for example, often attempts this uneasy balance between presenting information and testimony that will obviously be interpreted as anti-vaccine and simultaneously telling parents that they should make up their own minds based on the speculation presented. Of course, almost every single medical intervention includes risk. Thus, if vaccination carries at least some form of risk, individuals ought to be capable of informed (parental) consent, according to them. Likewise, there are certainly legitimate scientific criticisms one could offer regarding the safety and effectiveness of vaccination, but Kent thinks activists “just jump on a statement, a criticism, or hesitation that anybody in the medical community might express.”

Their movement has translated into opposition to any law or policy requiring that children be vaccinated, lest they pose an unwarranted health risk in the spread of infectious diseases. Last October, VCC and five separate mothers challenged the constitutionality of Ontario’s Immunization of School Pupils Act. They argue that Ontario law violates a number of Charter rights by making child vaccination compulsory, constraining the possibilities for conscientious objection, and not providing parents with accurate information related to potential risks. Lecturer in Political Science at the University of Waterloo, Christopher Bennett, thinks there’s an inconsistency here. On the one hand, freedom of expression is justified because it is intimately tied to individual wellbeing, because “there’s an intimate connection between fundamental beliefs and expressing the belief.” On the other hand, if anti-vaccine activism is tolerated and eventually effective, “some people get to advance their well-being expressively at the cost of reviving these diseases.”

In 2019, the World Health Organization (WHO) listed ‘vaccine hesitancy’ as a significant threat to global health. Its warning notes, in part: “Vaccination is one of the most cost-effective ways of avoiding disease – it currently prevents 2-3 million deaths a year, and a further 1.5 million could be avoided if global coverage of vaccinations improved.” But the issue does not just affect countries with relatively less public health infrastructure. In 2019, the city of New York experienced its most significant measles outbreak in almost three decades. Of the hundreds infected, almost three quarters of them were unvaccinated (others had incomplete vaccinations or simply didn’t know their vaccine history). The outbreak was particularly acute in Brooklyn’s ultra-Orthodox Jewish community, where anti-vaccine sentiment is palpable. Similarly, earlier this year, a mother in Colorado failed to fulfill a prescription for her ailing four-year old son after she was swayed by online anti-vaccination information. The boy unfortunately succumbed to his illness, and critics argue that vaccine skepticism or hesitancy spurred by online activism will make these cases a more regular occurrence. After a measles outbreak in Samoa, aided by relatively low vaccination rates, according to health officials, the government there arrested a prominent anti-vaccination activist. 

Due to the potential harm associated with this activism, there have been numerous efforts at suppression. VCC had billboards taken down in Ontario and Alberta after public complaints. But the most important front in this battle for public perception is the social media landscape, and platforms are beginning to be more aggressive in their approach. Last year, Facebook committed to limiting the reach of anti-vaccination material on its platform. If one searches Facebook for vaccine information at the moment, the results will prioritize information and links from reputable sources like the World Health Organization of the United Nations. Despite these changes, however, advocacy and fundraising still proliferate on the platform. Caught between wanting to keep Facebook relatively open and limiting the spread of deliberate misinformation, the company has erred on the side of what Robinson dubbed “token efforts,” tweaking its search algorithms as opposed to outright bans. 

If harm is a reliable justification for limiting expression, the case of anti-vaccination activism represents the extreme outer limit of the murky space between the merely offensive and the materially harmful. Or, to put it in the words Adams, “when we start to move up the ladder of harms to real, physical bodily harm,” the case for expressive restriction becomes more “compelling.” Despite many of the venues providing a platform for anti-vaccination activism not breaking the law, a sufficient level of harm could lead to other, more direct responses. ‘Deplatforming,’ as its colloquially known, refers to a range of protest tactics, including the pressuring of a venue to cancel an event, interrupting an event, or otherwise making it impossible for an event to continue. But even if deplatforming were morally justified in this context, we still know very little about the effectiveness of the tactic itself. The more unsavoury an individual or group is, the less likely we are to worry about their freedom of expression. But this is precisely the point. Freedom of expression is supposed to be a counter-majoritarian check on power that affords objectionable content constitutional protection. Facebook is a relatively uncomplicated example (much like a private theatre) because it is a platform that has wide discretion in the way that it regulates content. But there is a broader and more compelling question at hand: To what extent is it legitimate to deplatform anti-vaccination activism, in general, if we assume that it can cause significant harm?

When we think about the potentially negative effects of expression, our reflex is to conceptualize harm as something that accrues directly as a result of a specific utterance. Using the phenomenon of hate speech as an example, harm is inflicted by directly vilifying or subjecting a group to detestation by virtue of their identity. By contrast, the issue of vaccine skepticism or hesitancy is quite a bit different. The potentially negative effects are not necessarily the result of a predetermined or conscious effort to harm others. The harm is also diffuse in the sense that one can be harmed in complete ignorance of the expression itself (a Facebook group) and the subsequent individual decisions that are made as a result (not getting a child vaccinated). Tracing this decision-making process is no easy task, according to Adams. An individual’s choice not to vaccinate themselves or their children might be the result of a number of factors, only one of which might be exposure to anti-vaccination information.

Unlike hate speech, potential victims are not confined to a specific identifiable group either. As Robinson explained, lower rates of vaccination in a population not only pose a risk to those who choose to abstain; they also pose a risk to a population as a whole. Public health experts typically frame this more expansive harm using the concept of ‘herd immunity.’ Robinson pointed to the relatively high immunization rates for an infectious disease like measles as an example (in the Edmonton region, it surpasses 90%). Even if someone isn’t immunized against measles, “the fact that everyone else around you is protected [means] you're at a way lower risk.” The lower the rate of immunization, the longer an infectious disease can potentially spread. Unimmunized children might also pass along infectious diseases to those with relatively more fragile or compromised immune systems, like babies or those receiving chemotherapy. So the risk is not confined to any single child who is unvaccinated, but the larger population that may be harmed as a result of diluted herd immunity. This squares uneasily with the discourse of anti-vaccination activists, who at every moment appear to frame their movement as one of individual autonomy. Here “the link between the speech and the harm is readily apparent,” says Bennett. “It has this obvious other regarding dimension. It's just not a completely private choice.” 

Responding to potentially harmful expression highlights a paradox, then: deplatforming might unintentionally and exponentially increase its exposure and reach. For example, the filmmakers and activists featured in Vaxxed II are well aware that their exposure and reach were drastically expanded following the Tribeca controversy in 2016. The film is about the momentum they generated as a result and the subsequent connections they made with others across the continent. A brief perusal of the CFVC Facebook page reveals that the group’s goal includes creating a “safe zone for those who are constantly attacked for their beliefs” and “fight[ing] back against the system.” The film screening included a recorded preface and appeal from the founder of CFVC, Amanda Forbes Schwartzentruber, who tells supporters that “this is the year we’re going to change the narrative” while making a pitch for donations. If I were a supporter firmly situated in this subculture, it would be hard not see the issue through the prism of David and Goliath, with those questioning vaccination being the obvious David.

Watching the film surrounded by its supporters allowed me to understand this other, more subtle reason why the anti-vaccination movement is sometimes connecting with parents. One thread that runs through this activism is an edgy, subcultural contour. Some within the subculture practically revel in their non-conformity. They wage battle against the entire medical community, the pharmaceutical industry, the mainstream media, elected officials, and almost anyone and everyone deemed an expert in public life. As Adams mentioned, some may “use the very act of suppression as a basis for the veracity of their claims.” So it’s not just that there’s an insular cycle of confirmation bias, but that some actual legitimacy or authenticity is derived from an anti-authority stance within the subculture. Persecution, either real or imagined, might have the counterintuitive effect of hardening beliefs and subsequently contributing to the proliferation of (mostly) online conspiratorial subcultures. Kuntz argues that the censorship that his and anti-vaccination groups face is indicative of something: “what they’re afraid of is that people will lose trust in the vaccination program because they begin to realize that the claims to safety and effectiveness are not as rigid and robust.” He’s obviously not the only one. 

There’s always the risk that punitive responses create the perception that there’s something to hide, even if a well-trained public health expert can bombard you with mountains of empirical research. It’s also possible that counter-speech, at least in some circumstances, can effectively counter harmful speech and mitigate its potency further down the road. So there’s an additional risk, as Adams sees it, because “you lose opportunities for counter-speech when you suppress speech that is simply erroneous as opposed to sufficiently harmful.” So, we might say that even normatively good ideas ought to have a firm, reasoned grounding so that individuals will be more impervious to falsehood, deliberate or otherwise. Conversely, Bennett thinks that just because a small minority of individuals may flock to an unpopular view simply because it is unpopular, we don’t necessarily need objectively bad ideas used as a prop to collectively sharpen our intellect. He’s less interested in explicit deplatforming and instead advocates creatively allowing individuals to consensually expose themselves to conflicting information if their status quo is a social media echo chamber. But even if the harm is sufficient to justify expressive restriction and it can be done in a way that doesn’t amplify exposure, reach, and harm, there is still another associated problem, namely: the main target of deplatforming is mostly individuals and organizations but not ideas.

This matters if one is concerned about the long-term trajectory of a potentially harmful form of expression. The key takeaway is, I think, that while deplatforming may prevent one particular expression from connecting with a specific audience, it surely does not prevent the idea itself from connecting elsewhere. The deplatforming of anti-vaccination activists themselves has been fairly successful, as Kuntz himself readily admits, but this is only because they arouse little sympathy. The litmus test for deplatforming ought not be whether or not any individual or group is legitimately denied a platform but whether or not the harmful idea itself continues to gain momentum. 

Personally, I am not fundamentally opposed to deplatforming. As Adams mentioned, there is always a line to be drawn. But I do think that deplatforming should never be the knee-jerk response. This is especially so because the potentially unintended consequences associated with it are not well understood, despite the vigour of some its supporters. Unfortunately, if one wants to stem the tide of a potentially harmful idea, it will require tackling the idea itself and not just its main protagonists. Connecting with those most susceptible to misinformation is essential, and this requires both more thinking about deplatforming’s effectiveness and openness to parents’ multiple determinants of decision-making.

Currently, Canada has mandatory vaccination laws in Ontario and New Brunswick. But Robinson worries that parents who are staunchly anti-vaccination would simply homeschool their children in response, an option that is increasingly accessible. Further, those who are unsure might interpret these mandates negatively, which might lead to a backlash because they seem coerced by the government. She suggests focusing on a different group instead: parents experiencing all the “hectic and disorganized” effects of parenthood itself. We might actually be unfairly focusing on a minute percentage of parents who are explicitly skeptical or hesitant while there’s a significantly larger group of those who refrain from vaccination for completely different reasons. She wants us to explore other pragmatic approaches, like making vaccination more accessible to parents, educating children in school about the benefits and science of vaccination, and making vaccination a consistent topic in pre-natal education. For public health staff, she hopes that they first find out what parents are skeptical about and then present the scientific evidence in an “open and honest way.” Put another way, to blunt the force of freely circulating misinformation, one must consider those on the receiving end and not just those responsible for dissemination (as is the case with deplatforming).  

Because of Kent’s research, individuals will sometimes ask him to speak to individuals they are concerned about in a cult, hoping to provide the spark for an eventual escape. “In most cases, I seem to fail miserably,” he explains. In order to be persuasive in this context, one needs a conscious strategy because “the straight on frontal, factual, counter-argument just isn't going to work with them.” Robinson suspects the same strategy will fail in the context of anti-vaccination activists: “For the people that are truly anti-vaccination, it would be like me trying to change your religion.” The founder of the Vaccine Confidence Project at the London School of Hygiene and Tropical Medicine, Heidi Larson, has similar advice for those concerned about the issue: “The worst thing to do is tell people they’re ignorant or stupid. Often we’re talking about people’s children, and we should remember that all parents want the best for their child.” Perhaps the one silver lining of this problem is that parents really are guided by an intense desire to protect their children. Fortunately, this also includes those who I saw cuddling their babies in the Capitol Theatre while watching an anti-vaccination documentary.